Essential Thrombocythemia (ET) and viruses
I was diagnosed with Essential Thrombocythemia a few months ago, and I’m positive for JAK 2. So far, I have a “mild” case (platelets are below 600) and currently taking only 2 low-dose aspirin a day. Since my diagnosis I’ve gotten 2 colds/viruses. The first one turned into pneumonia, and I’ve never had pneumonia in my life; I’m currently sick with another cold or virus and on day 6. I feel like it’s getting progressively worse each day instead of better. Is this because of the ET? Is this how every little illness is going to be from now on?
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I think research is being conducted on whether an anti-inflammatory diet (basically a Mediterranean diet) can help with ET symptoms. It will be interesting to see what they find. A lot of people take big doses of turmeric supplements because it is an anti-inflammatory. However, turmeric can also interact with aspirin or other anti-coagulants. So I'd discuss supplements with my doc to make sure I didn't run a risk for bleeding.
My hematologist and GP both recommended that I take a multi-vit with calcium.
I find that cutting back on sugar and wheat-based starches (bread and pasta) seems to help with my energy levels. I will absolutely crash in the afternoon if I eat any kind of highly processed food. I learned this the hard way when I was dealing with my mother's funeral arrangements and estate and stupidly went through the drive through for a smoothie and small bag of fries.
I think everyone has to balance health and quality of life. In my case, I'm nearly 70, I already have ET and some co-morbidities to worry about, and I am not going to deny myself some small eating pleasures once in awhile, though I might wait to enjoy them in the evening, when the fatigue isn't going to hit me as hard.
Hi there my son is only 25 and has been diagnosed with ET and IBD that at started after his second Pfizer vaccine. He had never been to that doctor and started to feel weak and tired after the second does I too have read up in this but doctors say no.
I also have ET. I need to find out if it is Essential Thrombocythemia or thrombocytosis? I don’t think I even spelled those right. My Dr said your platelet count for a woman should be around 500,000 and mine were 1.2 million. I was tested for leukemia that was a painful test but gratefully negative. Dr said no hormones and an aspirin daily. But I need to know more. Not a day goes by that I don’t have a major headache. Im tired and I do get sick a lot. Spent a week in the hospital with pneumonia. Any advice would be appreciated. Im 58 years old.
Hi. I have ET and I have been taking Hydroxyuria for almost two years. It is keeping my platelets at an acceptable level. I find I am fatigued quite a bit. I was just wondering how to combat the itching. I take an allergy pill daily, but I break out in hives and they come and go. It’s just sometimes they are just relentless.
I was confused by this also. My hematologist told me I have Essential Thrombocytosis but my paperwork said I had Essential Thrombocythemia. I investigated this and found they are one and the same. Reason why?
Eileen
according to the nhlbi.nih.gov website: Thrombocythemia refers to a high platelet count that is not caused by another health condition. This condition is sometimes called primary or essential thrombocythemia. Thrombocytosis refers to a high platelet count caused by another disease or condition.
Hi Artie 4
Have you had the covid Vaccines?
I heard Claritin works for the itching.
Hi @bettyk49 I see you’re new to our forum and I’m happy you found us. You recently discovered that you have essential thrombcythemia. With your history of a TIA, the blood thinners you’re already on play an active role in treating ET since having too many platelets can cause abnormal blood clotting. So the blood thinner is taking the place of the aspirin.
It’s good that you’re seeing an oncologist/oncologist. That is a blood specialist. I’m surprised he/she didn’t talk over your diagnosis with you. I think at your next appointment with your hematolgist or their Nurse Practitioner, you should discuss what you’ve found on your My Chart so there is some clairification for you.
You were wondering if hemorrhagic thromboyctyemia is worse than essential thromboyctyhemia. They are one in the same. Essential thromboycythemia was formerly know as Hemorrhagic thrombocythemia.
When is your next appointment?
Thank you so much. My next appointment is March 13. They have been giving me a choice of 6 weeks or 3 months and tell me to call if I need to come in sooner. I choice 3 months but after reading my chart I wished I had an earlier appointment. I have had many iron infusions. So when I start feeling real tired I call for a sooner appointment. I had the TIA in 2014 and I have had chrons since 1990. I just thought they were keeping check on my anemia. Is Essential thrombocythemia a blood cancer? When I looked it up that is what it said. I definitely will talk with my PA. Thanks Again!!